Social Security Changes Rules to Benefit Applicants with ALS

It’s now much easier for a person with ALS to get Social Security Disability Insurance (SSDI) benefits, thanks in part to a push by an Ohio man with ALS, John Hunter.

John Hunter, speaking at an MDA meeting (top), helped pass a Social Security rule change that grants automatic disability benefits to unemployed people with ALS. Hunter is shown above with former Cleveland Indians pitcher and Hall of Famer Bob Feller, at an event to raise ALS awareness.

Social Security Administration (SSA) Commissioner Jo Anne Barnhart recently changed SSDI eligibility regulations in order to automatically grant disability status to anyone who isn’t working and has received an ALS diagnosis. Although applicants still must wait five months before receiving their first checks, this new "presumptive eligibility" ruling guarantees they won’t be turned down for benefits.

The Office of Management and Budget must approve the rule before it takes effect; approval is expected by late October, said Mark Hinkle, SSA spokesperson.

"Before we made this rule change, we were approving more than 90 percent of applicants with ALS at the initial level, but this will close the gap for the rest," Hinkle said.

Claimants with ALS sometimes were initially denied because they weren’t "disabled enough yet" to qualify. That’s what happened to John Hunter, 40, of Litchfield, Ohio.

Although his rapidly progressing ALS had disabled his arms and hands, he was turned down for SSDI because he was still walking at the time of his application in 2002. A scathing local TV news story about Hunter’s situation resulted in an abrupt reversal and approval by the SSA office.

Angered that SSA had been playing with time he didn’t have to waste, Hunter teamed up with local TV reporter Duane Pohlman and traveled to Washington to advocate for a change in the eligibility process for all people with ALS. Hunter and his wife, Jonna, spoke to members of the Ohio congressional delegation as well as SSA Deputy Commissioner Martin Gerry.

"We’re very excited to hear that this change has happened," said Hunter, who is recovering from a broken shoulder caused by a fall. "It’s an overwhelming feeling."

Hinkle said the rule change follows up on legislation passed in 2001 eliminating the Medicare waiting period for SSDI recipients with ALS. Although the new rule is unofficially being called the "John Hunter Rule," Hinkle noted that SSA doesn’t "name our regulations.

"But his situation certainly illustrated that we could do more to help people, and that’s why we did it."